Journalists who cover scientific and medical “breakthroughs” need to do a better job explaining the complexities of medical research and scientific inquiry.
We now have a public and policymakers at the highest levels who believe that acknowledging substantive data is optional.Public misunderstanding of the facts of state-of-the-art medicines, therapies, cures, technologies, discoveries, developments and their significance is widespread. Way too often the information the public receives is overstated and misleading. Newspapers and magazines don’t sell if stories are not sexy or intriguing, so publishers push journalists to write stories that are “hot.” Rarely does a story—in the media and in the peer-reviewed scientific and medical literature—describe something that did not work. As they prepare their stories, science and medical journalists push researchers to link even the most basic findings to practical, future applications, yet the reporters fail to clarify for the public how far apart the dots are that their stories have just blithely connected. But journalists are not the only ones forcing scientists to stretch their research’s relevance. Government agencies and other backers of scientific and medical research pressure scientists to over-speculate about possible applications of their work in order to justify the expense. Then comes the annual requirement to highlight “success” and “progress” before Congress. Years ago, when I worked at the National Institute of General Medical Sciences (the institute that funds basic, Nobel Prize-winning research at the National Institutes of Health), an oft-used saying was that explaining the work to Congress was challenging because “no one ever died of general medical sciences.” Policy makers, like the general public, were and remain surprisingly naïve about how discoveries and cures actually come about. They want “targeted” research and don’t understand that the most valuable insights—those that lead to cures and therapies and remediation—usually come from basic research into the workings of chemicals, biochemicals, cells, genes, and systems in the tiniest microbes up to the biosphere as a whole. Facts matter. That’s why journalists who write about new drugs and therapies and environmental issues have obligations to their audiences to paint clear, truthful, and complete pictures. Never mind that what the public wants to know about science and medicine is “why should I care about this?” and “what’s in it for me?” The consequences of false and hyped science and medical stories are several. We now have a public and policymakers at the highest levels who believe that acknowledging substantive data is optional. The refusal of the U.S. government policymakers to accept, until just recently, that global warming is real is the most egregious, but by no means the only, example of this serious problem. The frequent claim that “evolution is just a theory” shows how misinformed so many people are about something as fundamental as the basic vocabulary of science. “Theories” in science are fully supported by wide-ranging data, account for all available data, and have heft. In contrast, the word “theory” as used in common parlance is interchangeable with “hypothesis,” which implies conjecture rather than substance. The theory of evolution and the theory of gravity are two important scientific theories, but I seriously doubt that any of the evolution deniers ever jump up into the air and worry that they will not land back down on earth. One of the longest-running hyped stories that I’ve been following is that of gene therapy. Not a single gene therapy experiment has ever worked without producing unacceptable or lethal consequences. Yet, for more than three decades, the media and many scientists and commentators have talked about gene therapy as though it were standard care. Were one to stop people randomly on the street and ask them if they could get gene therapy at their doctors’ offices, I strongly suspect that most would be absolutely certain that they could.
All journalists, like all trial witnesses, have an obligation to tell the truth, the whole truth, and nothing but the truth.Miracle babies—either tiny premature babies (preemies) or higher multiples (quintuplets, sextuplets, septuplets)—continue to be a favorite pie-in-the-sky story of journalists. Coverage of these births typically lasts about a week. The journalists rarely, if ever, go back to see and report on how the babies are doing. Thus, the public has no concept of how many of these babies die in the hospital without ever going home, how many are actually growing up in hospitals, either because they are too sick to leave or have been abandoned, and how many of those who did make it home are growing up blind, deaf, with cerebral palsy, and with other common signs and disabilities associated with “preemie syndrome.” In October 2006, a tiny preemie was born in Florida when she was just over halfway to full term—21 weeks. Anatomy textbooks, websites, and even coffee table picture books make clear that a newborn this young lacks lungs that can function in air. Yet none of the stories about the Florida baby mentioned this or talked about well-documented bad outcomes for babies born so early, at what are called “the limits of viability.” Follow up studies in the United Kingdom of every baby born there during an eight month period in 1995 at fewer than 26 weeks gestation revealed that the outcomes were so dire that national policies were changed, and neonatologists in the U.K. no longer offer aggressive intensive care to preemies this tiny. By not including outcome data in the Flordia “miracle baby’s” story and in the stories of other, similar babies, journalists deceive the public into believing that every baby, no matter how small or how sick, can grow up healthy and intact. Young women and their partners come to the hospital expecting, asking for, and increasingly demanding miracles, which are simply not medically possible. Most surviving very low birth weight babies and their families experience lives of tremendous suffering and pain. All journalists, like all trial witnesses, have an obligation to tell the truth, the whole truth, and nothing but the truth. Were reporters to more carefully attend to truth telling, the public might eventually become more discerning of facts and their consequences, less demanding of miracles and quick fixes, and more proactive in lobbying policymakers to fund thoughtful programs and craft genuine policies aimed at addressing the complex and daunting medical and environmental problems we face today. Science and medical stories need not be lengthy to be accurate. When I wrote “This Week in Science” for Science magazine in the 1980s and 1990s, I had just 50 to 200 words in which to explain complex discoveries in English, not jargon. Strunk and White’s 13th imperative—omit needless words—became mine and has stuck with me as I write short but often complex commentaries for National Public Radio, which allows me no more than 450 words per story. Not every disease can be cured, not every painful condition can be eased, not every tiny and sick baby can be made healthy, not every environmental crisis can be remediated. But surely medicine and science can serve society better than they are doing today. A first step in this direction could be to restore integrity to reporting. Journalists who write about science and medicine must work harder to become part of the solution rather than continuing to be part of the problem. Ruth Levy Guyer is author of Baby at Risk: The Uncertain Legacies of Medical Miracles for Babies, Families and Society (Capital Books, 2006). She teaches courses in medical and environmental ethics at Haverford College and is a regular commentator on National Public Radio’s weekend show All Things Considered. Her Ph.D. is in immunology. Notes 1) Lennart Nilsson & Lars Hamberger, A Child is Born, Fourth Edition, Merloyd Lawrence/Delacorte Press, 2003. 2) The U.K.’s Epicure study and the guidelines are described in the BBC documentary Miracle Baby Grows Up. 3) William Strunk & E.B. White, The Elements of Style, Second Edition, McMillan Company, 1972. 4) These commentaries are online at http://www.npr.org/search.php?text=ruth+levy+guyer
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